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Patient and Public Advisory Service

Patient and Public Advisory Service

Carol Porteous, based in the Wellcome Trust Clinical Research Facility at the Western General Hospital, is the Patient and Public Involvement Advisor. She and the patient and public involvement group, comprising 30 members of the public, advise and support researchers and the public to ensure patient and public involvement is helpful and meaningful for everyone.

The patient and public involvement advisory service includes:

Helping researchers to find people to involve in their research. This might include identifying patients to be co-applicants on a study, members of a study steering group or Trial Steering Committee, forming a lay advisory group or advising on dissemination. Some research teams are setting up their own patient reference groups, so they have a pool of people who can advise them on research and clinical work.

Advising on a range of methods of patient and public involvement. Involvement works best if it’s tailored to individual projects. A guide to patient and public involvement for researchers is available on the patient and public involvement webpages at https://www.crts.org.uk.

Identifying opportunities for members of the public who want to get involved in research. Carol can arrange access for researchers to the patient and public involvement group and advise on how to find patients with specific conditions if that is required.

Providing lay reviewers. Members of the patient and public advisory group regularly review and improve lay summaries for grant applications and research reports. A patient review panel has also reviewed PhD studentship applications for the Asthma UK Centre for Applied Research.

Advising on budgeting and reimbursement for patient and public involvement. Carol can advise on costing for patient and public involvement during the grant application process.

Training for patient and public involvement. Regular workshops for researchers and members of the public are held, including the popular Practical Guide to Patient and Public Involvement in Research.

Public engagement activities. Members of the patient and public involvement group have spoken about their experience of research at national conferences, the Scottish Parliament and in schools. Allison and Professor Newby were advisors on PULSE, a Wellcome Trust-funded community arts project in Muirhouse, aimed at engaging young people with science. The PULSE performance in Muirhouse in September 2014 attracted 120 members of the public and a video is available.

Helping researchers to write in Plain English. We will happily review your lay summaries and help you write patient information sheets so they are clearer (and usually shorter!) After all, the easier the PIS is to read, the more informed the consent.

Bursaries for patient and public involvement. Small bursaries are available (up to £500) for NHS Lothian/University of Edinburgh researchers, to support researchers to actively involve patients and the public in their research. The bursaries will support involvement that is not otherwise able to be costed, for example prior to grant application. They will not normally fund PPI activities which can be costed into a grant application.